The POMONA-ESP project methodology: Collecting data on health indicators for people with intellectual developmental disorders

J Appl Res Intellect Disabil. 2019 Jan;32(1):15-22. doi: 10.1111/jar.12497. Epub 2018 Jul 15.

Abstract

Background: People with intellectual developmental disorders have significant health disparities and a lack of proper attention to their health needs. They have been underrepresented in scientific research, and very few studies have been carried out using a representative randomized sample. The aim of this study was to describe the methods used in the POMONA-ESP project to recruit a representative and randomized sample of participants with intellectual developmental disorders.

Methods: The POMONA-ESP project is an observational cross-sectional study. It aims to explore the health status of people with intellectual developmental disorders across Spain and the use they make of health services.

Results and conclusions: The results of the POMONA-ESP project may have a major impact on people with intellectual developmental disorders and society in general. It is the first study to obtain geographically representative epidemiological data from a large sample, information that is fundamental to improving care and healthcare planning for people with intellectual developmental disorders.

Keywords: developmental disabilities; health profiles; intellectual developmental disorders; intellectual disability; methods.

Publication types

  • Multicenter Study
  • Observational Study

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Cross-Sectional Studies
  • Female
  • Humans
  • Intellectual Disability* / classification
  • Intellectual Disability* / epidemiology
  • Intellectual Disability* / physiopathology
  • Intellectual Disability* / therapy
  • Male
  • Middle Aged
  • Patient Acceptance of Health Care / statistics & numerical data*
  • Severity of Illness Index*
  • Spain / epidemiology
  • Young Adult